A Question about Aids Wasting Syndrome, Good T-Cell Count and Low Viral Load

[Martha]

Hello Everyone.  I have talked about our friend who is approaching death from Aids Dementia and PML but this is about his wife. She is 5 feet 8 inches tall and only weighs about 90 lbs. now.  She coughs a lot and is just getting over a respiratory infection. Her sister is worried and so am I. Can a person get an Opportunistic Infection like PCP if the T-Cell count is good and the viral load is low? Thank you for any advice. This has all happened so fast. They were both diagnosed in April of this year.

[Jeff G]

Hello Everyone.  I have talked about our friend who is approaching death from Aids Dementia and PML but this is about his wife. She is 5 feet 8 inches tall and only weighs about 90 lbs. now.  She coughs a lot and is just getting over a respiratory infection. Her sister is worried and so am I. Can a person get an Opportunistic Infection like PCP if the T-Cell count is good and the viral load is low? Thank you for any advice. This has all happened so fast. They were both diagnosed in April of this year.

A cd4 count of around 200 leaves people with HIV vulnerable to infections even if the viral load is suppressed . The prophylaxis drugs that are used to ward off PCP are very effective and I'm assuming she is on one of the preventive medications if her cd4 count is in that range .

Has she been checked for TB ? if not its a test that she might should have in light of the respiratory problems she is having .

 

[Martha]

Thank you Jeff. She is at the doctor today to get the results of her current blood tests. I will ask her if she had a TB test. I think her T-Cell count was in the 600 the last time. I am hoping the weight loss is the stress of her husband slipping away. She is as thin as her husband now. She doesn't have much more weight she can lose. She looks very sick.

[Jeff G]

Thank you Jeff. She is at the doctor today to get the results of her current blood tests. I will ask her if she had a TB test. I think her T-Cell count was in the 600 the last time. I am hoping the weight loss is the stress of her husband slipping away. She is as thin as her husband now. She doesn't have much more weight she can lose. She looks very sick.

I see , with a cd4 count of 600 she isn't at risk for PCP . The best way forward is to see whats up with the respiratory issue but it doesn't look as if its HIV related .

[Martha]

Jeff, I am glad it isn't HIV related. She probably has COPD from smoking. I wish the doctor would do more tests like a chest x-ray.  She now has a general family doctor too so I will ask her to ask for an x-ray to see what is going on in her lungs. She has uncontrollable shaking but that could be her nerves. She is taking some drug for anxiety (maybe Xanax) that seems to help but she can't sleep at night. I hope the doctor can give her something so she can get some restful sleep.

[wolfter]

So sorry your friends are going through this but they're very fortunate to have such a caring and compassionate friend.

Wasting syndrome is totally different than being thin due to lack of eating.  It sounds like your friend suffers from a bit of stress anorexia?  I've suffered both in the past.  A lot of people refuse to eat during extremely stressful life events as it's almost a way of being in control of something, anything.

Sending lots of positive energy their way.

Wolfie

[Martha]

Some good news. She got her test results back. She is taking Stribild. Her Viral Load is 20 and her T-Cell count is 780. Now all we need to do is get her to eat enough to put on some weight.

[Martha]

Thank you Wolfter. With the stress she is under it could be just that.

[Martha]

Wolfter, I am so glad I can help them. My son developed Aids before the good medicine. I am thrilled to see the drug working for her. We can't save her husband that we love dearly but maybe we can save her.

[wolfter]

Some good news. She got her test results back. She is taking Stribild. Her Viral Load is 20 and her T-Cell count is 780. Now all we need to do is get her to eat enough to put on some weight.

It's not unusual to actually gain weight pretty quickly after becoming well controlled with medication.  Heck, her numbers are much better than mine.

[Martha]

Wolfter,  I wish you the best with your numbers. Because of the stress of moving and her husband of 30 years approaching the end I thought her numbers wouldn't be as good. She started a few months ago with a viral load count over 10,000 but I can't remember her T-Cell numbers.

[Ann]

Martha, my gut instincts are telling me that your friend's weight loss has nothing physically to do with hiv, but everything to do with all the stress and unpleasant emotions hiv has brought into her life recently.

It's difficult enough to deal with your own diagnosis, even more difficult to deal with two diagnoses at once, and astronomically difficult to deal with a terminal diagnosis of a loved one. And moving house on top of it all? Moving house is in the top five causes of stress, up there with bereavement and divorce. That poor woman!

She probably has little appetite (stress will do that) and cooking is probably the last thing she feels like doing. Can you cook for her? Do you know her favourite foods, or comfort foods? Can you take her to her favourite restaurants?

I don't know how much actual, physical contact you have with her, but if you're in her company a lot you can try to make sure she's eating at least once decent meal a day. As you realise, she can't afford to lose too much more weight and ideally, she should be putting some weight back on.

I know when I've gone through periods of having no appetite, if someone puts a nice meal in front of me I find I can eat more than I would have thought possible. Having a lack of appetite is part of our hard-wired fight or flight response to danger and stress, and sometimes the smell of a favourite food can override this response.

So I guess what I'm trying to say, in a nutshell, is rather than asking her if she wants to eat, prepare some food you know she likes and put it in front of her. Sit down and eat with her as well - otherwise she may feel like you're making a fuss, or trying to force her to eat and that would be counter-productive.

Regarding her chest infection, there's a good chance that it's also ultimately down to stress. She's been spending time in a hospital, hospitals are good places to pick up bugs, and being really stressed out for a long period of time will lower your immune defences, regardless of hiv status. It's unlikely to be anything serious; just keep an eye on her and remind her to see a doctor if it doesn't improve soon.

Along with eating right (or eating at all), please try to make sure she's getting enough rest. Is she sleeping well? If not, get her to ask her doctor about a temporary sleeping aid to get her through this tough time. She really needs her rest if she's going to get rid of the bad chest and stay healthy.

I hope some of this helps.

I'm glad she's got you, Martha. Hang in there and remember to take care of yourself as well.

Hugs,
Ann
xxx

[Martha]

Thank you Ann. I think you are right. I didn't know that about moving. She had to sell almost everything to move into an apartment. She said 30 years of possessions had to be sorted and sold and most things for virtually nothing. I do make her a meal when she comes to visit her Rottweiler and Weimaraner that we now have. I now have 7 dogs but we build a 5 kennel cement turnout area this summer for them so the work isn't very hard.

My husband is a disabled Vietnam Veteran so we are home all of the time and we live way out in the country. When she comes to visit the dogs they make her laugh and she is happy. Getting rid of her dogs were what made her so upset. They have been there for her with the tears and sadness and we just had to take them in so she could see them whenever she wants.

 I see her around once a week. Her husband is almost in a coma and he is near death. I miss him already. He was and still is my husband's best friend. He is taking it very hard but handling it since we went through my son's death. It would be merciful if he passed away soon.

 I was close to her but nothing like our relationship now. They are 49 and I am 65 so we have years between us. I am more like an older sister or a mother. Her mother is angry and 75 and not at all forgiving of whatever caused HIV. I have taken on that role and I am glad I have a little knowledge to help her.